More Than My Chair

Morgan’s story, as told to Sammy Voors

More Than My Chair

            When I was first learning to walk with crutches, my mom took me to the mall and let me go. As I tried to walk, I wobbled down the hall and fell down, over and over again. Instead of my mom running to my rescue and picking me up, she looked at me and said, “You can do it. Get up on your own.” My mom was in a psychology class at the time, so she used this as an opportunity to teach me how to deal with not only adversity, but that I could do anything that I put my mind to.  She also used me as her personal guinea pig for class. This, of course, caused other people at the mall to freak out and come up to Mom calling her a “monster” and ask her what she was doing to this poor child (me). But it’s okay, though. I know why she was doing it, and I am glad she did what she did.

The doctors don’t exactly know what is wrong with me. I have too many anomalies. What I have is congenital, meaning I have had it since birth. It started being born and not breathing. Don’t worry, I pulled out my own breathing tube two days later. Not long after scoliosis started developing, but the doctors said I’d be fine. Ha, not so much. The scoliosis did not leave much room for my heart and lungs to develop, so by two years old, I had to have surgery. They braced me with a cadaver bone,  a synthetic bone, and one of my ribs in between my shoulder blades. That healed up and I was doing well; I was hitting all my milestones as a baby, ya know, walking, crawling, all those things. Then I started falling all the time. It wasn’t the normal toddler fall, though. My legs were giving out on me. It took my mom five different doctors and five different hospitals for one of them just to agree to do an MRI. The MRI showed that I developed kyphosis, which is a different type of curvature of the spine, in the same place that was braced for the scoliosis. When they went in to do the kyphosis bracing, the doctors saw that I had fatty tissue pieces growing on my spinal cord, some of the vertebrae were shaped wrong, and my spinal cord was split in half at the bottom. So, whatever I have, it is kinda like spina bifida, kinda like cerebral palsy, but neither of those. As I have gotten older my legs also presented some issues. I have really tight hamstrings, so I can’t straighten my legs all the way. Before I was twelve years old I used to walk with my ankles turned out and rotated in, so rods had to be put in place up the bone and across my ankle to correct them. Unfortunately, I broke those and had to have screws put in. I also have a rib missing, but instead of it being my floating rib, it’s one of my ribs from the top. In addition to this, my nerves go through one of my rib bones, so at random times my arms go to sleep and I can’t control them. Nobody knows how to fix it. Even though it’s frustrating, these are the moments I look back on and say, “Well, that was a defining moment.”

Having faced such adversity in life so far has definitely impacted how I look at things. My biggest inspiration in life is Dr. Kates, my physical medicine doctor from my toddler years to high school. Dr. Kates—who is also in a chair full-time —was the one who really helped push for my independence. Not my independence from my family, necessarily, but independence when it came to my disability. A big thing in my household is that you can do anything that you want to do. It may take you longer, or you may have to do it differently, but it can be done, and Dr. Kates really helped to enforce that. It was cool to see that even though she was in a chair full-time, she could still do everything.  Because of the influences in my life, and the opportunities and experiences I have gained, I feel that it is my place to bridge the gap between the disabled community and the able-bodied community.

I am very vocal about my disability, what I need, and what needs to be fixed to make things more ADA (helping with the new engineering building on campus to lower lab benches to be more wheelchair-accessible, making sure elevators are always in service, etc.). It’s nice to be able to see people’s views on people with disabilities change after getting to know me because a lot of unfortunate stereotyping has been done in the media or throughout the community where anybody with a disability is “Poor them, there is nothing they are ever going to amount to, there is nothing they can do,” so I like to be out in the world and say “Look at me, this is everything I am doing and everything I can do.”

I’d much rather inform people about what is going on, rather than continuing to allow them to be ignorant. I have no problem going over to someone that is staring for longer than they should and asking them if they want to know what is wrong. Once I am done explaining it to them, they realize that I am not that different from them. I can credit this sense of confidence and motivation to my mom, and I am most grateful for it. She taught me that I can do it, and so much more. I want to be able to spread the word that everybody with a disability can do it. I have definitely learned some important life lessons so far and will continue to learn and grow from every experience I have.  I will not let my disability determine who I am or what I can do. I will strive for the best education, the best experiences, not letting my disability stop me. Another lesson I have learned is that even if I am struggling, even if I am having a bad day, smile. You never know if you can make somebody else’s day. The more I smile, the better it helps me, so I might as well help someone else, too.